LongCovid recovery process: Back to square one

June 22 I had to go back to square one on my long covid recovery as I got reinfected, most probably at Schiphol on my way back home from CiscoLive. While my earlier went quite well, this one was bad and it took me a long while to get back up to a time where I’m able to write again. I thought it would be good to write down what Long Covid recovery process I have been taken and learned by my occupational therapist.

Even though Long Covid (or medically now defined as Post Acute Covid Syndrom) is new, it has lots of parallels with other remnant effects of post-viral infections; the incidence is much higher then Flu, Q-fever or others though. The recovery process is based on pacing and the parallels were recognized by rehabilitation doctors in the first wave (where graded exercise was actually making patients worse then better).

Long Covid recovery is all about managing the energy. Let’s start with the figure below. It shows you the energy before someone gets Long Covid. As you can see, there’s a lot of energy and even throughout the period, you have your ups and downs, e.g. a bit more or less energy, depending on a lot of factors like stress, a cold, or just not having had enough sleep. But overall you’re ok.

If you go over your limit on day, for like meeting a deadline or have some stress at work or in the car, then the next day your energy is a bit lower, like at mark A.

Then at mark B, you get Covid (or any other viral infection) and the energy you have goes in your body to fight the virus infection (create a fever, trigger immune system, the works).  And this is when you are ill. Still there are ups & downs, but you have much less energy and the energy differs  much more on a daily basis.

Usually, when you’ve fought the virus, your body takes some time to get back to your old levels, but it usually happens in a few weeks, of course depending on the type of virus infection. So you can get back to work.

Long Covid is different though… It keeps you on low energy; the reason isn’t quite clear yet. There is a lot of research going on and there are some hypothesis about why this is happening. The fact is that you remain low in your energy for a much longer time. 

And then for some, not all, the body starts to recover and gives you more dialy energy,.  And recovery process is started, though much slower then a normal viral infection.

Yet there is a very big big but, both when you’re in low energy and while you get more energy.

That is if you cross your energy limit, e.g. you go in your reserves, you get pushed back to a much lower energy level then you would have like when healthy or after a normal viral infection. You can even get pushed back months. This is shown in the figure below with the green arrow. 

Doing too much literally sets you back. And the bad part is, you don’t know that you’ve crossed the border until you start to pay the price; that can happen the next day or even the next week.

Recovery process

So what is the recovery process all about? It’s about energy management and learning how much you can do on a single day and make sure that you stay well within your limits.  And that is achieved in a few steps (that take a long long time).

Phase 1: baseline

The first phase is to set a baseline. Learn how much energy you have by writing down your activities, rest periods and grade them. There’s a lot going on, like the energy pyramid, that needs to be taken into account. But do it on a feeling. Once you have that baseline, you stick well below your limits and stay there, like a smooth running stream of water. Nothing wild, relaxing and everything is ok. Not focusing on wanting to improve here is key.

Phase 2: buildup energy

After you’ve been able to settle in a smooth stream of energy, your body somehow starts to improve, perhaps not directly visible, but slowly it improves a bit. And that is your recover process. And in this phase it is very important to keep your energy under your limits. And that is very very tough. Cause suddenly you feel you can do so much more, but there’s the pitfall you do too much and get a setback, or pay the bill as I share with others. 

Of course this phase has a lot of pitfalls and will take time. Some may recover within months, others may take years. For me it takes a lot of effort discipline and selfmanagement to improve. Which I am at the moment. I’ve also been frustrated and scared at moments, as just a tiny bit of some setback, like an asthma relaps can set you back to phase 1 almost intantly.

Generic tips

This recovery process is very similar to a burnout recovery process; the only difference is that with burnout the body, brains and mind are all in agreement that all the energy is drained. With LongCovid the brains and body are energy-drained and your mind thinks differently.

During this year I have been working on an energy management system based on this recovery process mechanism, the spoon theory and some aspects from the IT world. It’s how I have been managing (and reviewing) my progress over the past months and been able to cope with LongCovid. I will write a different post on that topic.

Disclaimer!
I am not a medical trained person and this is not medical advice. This blog post is about my personal journey in Long Covid recovery that I want to share to help others. For any questions always consult your own medical professionals!

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